How do you make people aware without boring them?

How do I raise awareness and tell people what ME is really like without boring them and giving them information they are not interested in?

When I asked this question on facebook an ME sufferer replied saying;  “What about an obstacle course consisting of having to try and walk through porridge in a weighted jacket while bright lights and loud noises assault them, etc, then get to the end and have a sign saying ‘now imagine doing that again while in a lot of pain. That’s how it feels just to walk to the kitchen with ME’.?”  That’s a great idea wish it was practical.

I want people to know basic facts and accept that the illness is what sufferers say that it is and to accept the impact it has on our lives.  There are many serious illnesses that affect people really badly, I don’t want people to think that I am making a big fuss or saying that what I have is worse than other illnesses.  ME is not normally life threatening, but it is seriously life altering and we have to live with that every day.  I have lived nearly half my life with this illness and still struggle to accept and understand it myself, so I can’t really expect people that it doesn’t affect to be interested or understanding.

I wanted to find a list of basic symptoms, but again that doesn’t really show how we feel and many of the symptoms other people have, but its the having many of them all the time and at the same time that makes things so hard and that fact that symptoms can vary greatly even in the same day.  personally I never feel well and don’t really have ‘good days’ although I do push myself to do many things and suffer for it, both at the time and afterwards.

I was really ill yesterday and hardly able to get out of bed and already feel quite ill today, but need to push on.  I got in a bit of a strop as I felt people weren’t taking the fundraising and awareness seriously.  I have raised £280 which is great, but when £100 of it is from my husband it feels like it is us that are doing all the work.  ME already costs us a huge amount in day to day living and it upsets me that people can’t be bothered to donate even a tiny amount to show their support.  I know times are hard and that some people can’t afford to give and I do accept that and would never pressurise anyone to give, but there are people who just don’t seem to care and who can afford it.  I know we all have demands all the time to donate money and we can’t give to everything, but it feels like an personal insult to me and ME from some people. The money I have got is mainly from people I don’t know that well or from people who can’t really afford it, so I am touched by the donations and you learn who cares.

Personally I think everyone should read Diana’s Story, but its out of print, although is available on Kindle also Surviving ME also out of print 🙁 so not very helpful.  Another well presented and shorter book is Can I tell you about ME/Chronic Fatigue and it is recommended for friends, family and professionals.  I have copies of all these books if people want to borrow them and look after them and return them and I will take them when I meet with people to raise awareness.

ME Symptoms

M.E. affects people in different ways and to differing degrees. It’s a very variable
illness and symptoms can change over time. 

Fatigue
• persistent and overwhelming tiredness, which is experienced as both
physical and mental exhaustion
• is not significantly improved by resting
Feeling generally unwell
• having flu-like symptoms (“general malaise”)

Recurrent sore throat
• with or without swollen glands

Pain
• aching muscles or joints
• nerve pains or pins and needles
• headache or migraine
• twitching muscles or cramps
• abdominal pain (stomach or bowel problems)

Sleep disturbance
• unrefreshing sleep
• difficulty getting off to sleep
• waking for long periods in the early hours
• light, dreamy, restless sleep
• sleep reversal (eg. sleeping from 4am till midday)
• hypersomnia (sleeping for a long time)

Concentration, thinking and memory
• reduced attention span
• short-term memory problems
• word-finding difficulties
• inability to plan or organise thoughts
• loss of concentration
– all often described by people with M.E. as “brain fog”

Mood
• frustration
• anxiety
• panic attacks
• low mood, depression
• mood swings and irritability

Problems with the nervous system
• poor temperature control
• dizziness on standing up
• hyper-sensitivity to light and sound
• sweating
• loss of balance

Digestive problems (which can also be Irritable Bowel Syndrome)
• nausea
• loss of appetite
• indigestion
• excessive wind/bloating
• cramps
• alternating diarrhoea and constipation

Intolerance eg:
• odours
• some foods (eg. dairy or wheat)
• some medications
• alcohol
• other substances

M.E. fatigue is very different from ordinary tiredness. Feeling extremely tired or exhausted most, or all of the time, is one of the main symptoms of M.E. This feels very different from ordinary tiredness. Simple physical or mental activities, or combinations of activities, can leave you feeling shattered or struggling to function. You can also experience an increase in other symptoms. You may feel the impact straightaway but it can typically take a day or two to kick in. This is a key feature of the way M.E. affects people.

Women often find that symptoms worsen at different times in their menstrual
cycle.

Taken from Action for ME

I have all these symptoms except for the sleeping a long time, I sleep very little.

Finally as I am struggling to function now and need to lie down before I fall down!

Here is a demonstration of the affect on functioning;
The HFME 3 Part M.E. ability & severity scale
PART 2 – COGNITIVE ABILITY SCALE
Copyright Jodi Bassett 2005 to 2010. Taken from www.hfme.org
FULLY RECOVERED
100%
An unrestricted level of cognitive functioning is possible.
VIRTUALLY RECOVERED
90%
A high level of cognitive functioning is possible; around 90% of pre-illness level. Able to cope on a cognitive level with full-time study or work without difficulty and enjoy a full social life.
MILDLY AFFECTED
80%
A high level of cognitive functioning is possible, around 80 – 90%. Minimal restrictions apply for activities that demand a high standard of cognitive functioning. Unable to manage full-time study or work without difficulty in areas that place an excessive demand on a cognitive level.
70%
Cognitive functioning is at/or around 70 – 80%; a daily cognitive activity limit is clearly noted. Unable to work fulltime where high demands are made on a cognitive level, but can work fulltime in less demanding jobs if hours are flexible. Some restrictions on social life.
MODERATELY AFFECTED
60%
Cognitive functioning is at/or around 60% ; unable to perform tasks which are excessively demanding on a cognitive level, but can complete lighter activities for 5 – 7 hours a day although rest periods are required. Cognitive functioning degenerates significantly in a crowded, noisy or busy environment or with sustained and/or high level use. Social life may be moderately affected.
50%
Cognitive functioning is at/or around 40 -50%; unable to perform tasks which are excessively demanding on a cognitive level, but able to work part-time in lighter activities for 4 – 5 hours a day (or perhaps longer at a reduced quality level) if requirements for quiet and resting are met. Cognitive functioning degenerates significantly in a crowded, noisy or busy environment or with sustained and/or high level use. Social activities with environments that are quiet and not mentally challenging are possible.
MODERATELY TO SEVERELY AFFECTED
30%
Cognitive functioning is reduced to around 30 – 40%; unable to perform mentally challenging tasks, but able to complete simpler cognitive tasks (study or work) for 3 – 4 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration and cognitive ability are significantly affected. Following the plots of some TV shows or books may be difficult. Non-mentally challenging social activities possible on a limited basis.
20%
Cognitive functioning is reduced to around 20%; unable to perform mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for 2 – 3 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected. Following the plots of TV shows or books may be difficult. Non-mentally challenging social activities possible on a limited basis.
SEVERELY AFFECTED
10%
Cognitive functioning is reduced to around 10%; unable to perform mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for 1 – 2 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected at all times and may be severely affected during relapses. Concentration for more than half an hour at a time may be extremely difficult. Following the plots of some TV shows or books may be difficult or impossible. Non-mentally challenging social activities possible on a very restricted basis.
5%
Cognitive functioning is reduced to around 5%; unable to perform even moderately mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for about an hour or so each day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected at all times and may be severely affected during relapses. Concentration for more than 10 to 15 minutes at a time may be extremely difficult. Following the plots of TV shows or books may be difficult or impossible. Non-mentally challenging social activities possible occasionally for short periods.
VERY SEVERELY AFFECTED
3%
Cognitive functioning is reduced to less than 5%; able to complete simple cognitive tasks for about 10-30 minutes each day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are severely affected. Concentration may be extremely difficult. Only short periods of TV, radio or reading are possible. A friend can be seen for approximately 10 – 30 minutes a week.
1%
May be able to complete simple cognitive tasks such as talking, listening to speech or reading (with difficulty) for several 2–10 minute periods throughout the day if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are very severely affected. Concentration may be extremely difficult. There may be an inability to maintain full consciousness throughout the day. No TV is possible but quiet music or an audio book may be listened to for short periods. A close friend or family member can be seen for a few minutes, occasionally.
PROFOUNDLY SEVERELY AFFECTED
0.5%
Concentration, memory and other cognitive abilities are extremely and severely affected. Achieving even a low level of concentration may be extremely difficult or impossible, and there may be a high degree of cognitive confusion as a result. No TV or radio is possible. There may also be a difficulty maintaining consciousness for more than a few minutes at a time. Receiving visitors (even close family members) is almost impossible or impossible. Talking, reading or writing more than the occasional few words is often impossible.

The HFME 3 Part M.E. ability & severity scale

PART 2 – COGNITIVE ABILITY SCALE


Copyright Jodi Bassett 2005 to 2010. Taken from www.hfme.org

FULLY RECOVERED

100%

An unrestricted level of cognitive functioning is possible.

VIRTUALLY RECOVERED

90%

A high level of cognitive functioning is possible; around 90% of pre-illness level. Able to cope on a cognitive level with full-time study or work without difficulty and enjoy a full social life.

MILDLY AFFECTED

80%

A high level of cognitive functioning is possible, around 80 – 90%. Minimal restrictions apply for activities that demand a high standard of cognitive functioning. Unable to manage full-time study or work without difficulty in areas that place an excessive demand on a cognitive level.

 

70%

Cognitive functioning is at/or around 70 – 80%; a daily cognitive activity limit is clearly noted. Unable to work fulltime where high demands are made on a cognitive level, but can work fulltime in less demanding jobs if hours are flexible. Some restrictions on social life.

MODERATELY AFFECTED

60%

Cognitive functioning is at/or around 60% ; unable to perform tasks which are excessively demanding on a cognitive level, but can complete lighter activities for 5 – 7 hours a day although rest periods are required. Cognitive functioning degenerates significantly in a crowded, noisy or busy environment or with sustained and/or high level use. Social life may be moderately affected.

 

50%

Cognitive functioning is at/or around 40 -50%; unable to perform tasks which are excessively demanding on a cognitive level, but able to work part-time in lighter activities for 4 – 5 hours a day (or perhaps longer at a reduced quality level) if requirements for quiet and resting are met. Cognitive functioning degenerates significantly in a crowded, noisy or busy environment or with sustained and/or high level use. Social activities with environments that are quiet and not mentally challenging are possible.

MODERATELY TO SEVERELY AFFECTED

30%

Cognitive functioning is reduced to around 30 – 40%; unable to perform mentally challenging tasks, but able to complete simpler cognitive tasks (study or work) for 3 – 4 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration and cognitive ability are significantly affected. Following the plots of some TV shows or books may be difficult. Non-mentally challenging social activities possible on a limited basis.

 

20%

Cognitive functioning is reduced to around 20%; unable to perform mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for 2 – 3 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected. Following the plots of TV shows or books may be difficult. Non-mentally challenging social activities possible on a limited basis.

SEVERELY AFFECTED

10%

Cognitive functioning is reduced to around 10%; unable to perform mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for 1 – 2 hours a day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected at all times and may be severely affected during relapses. Concentration for more than half an hour at a time may be extremely difficult. Following the plots of some TV shows or books may be difficult or impossible. Non-mentally challenging social activities possible on a very restricted basis.

 

5%

Cognitive functioning is reduced to around 5%; unable to perform even moderately mentally challenging tasks easily or often, but able to complete less complex cognitive tasks for about an hour or so each day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are significantly affected at all times and may be severely affected during relapses. Concentration for more than 10 to 15 minutes at a time may be extremely difficult. Following the plots of TV shows or books may be difficult or impossible. Non-mentally challenging social activities possible occasionally for short periods.

VERY SEVERELY AFFECTED

3%

Cognitive functioning is reduced to less than 5%; able to complete simple cognitive tasks for about 10-30 minutes each day (or perhaps longer at a lower quality level) if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are severely affected. Concentration may be extremely difficult. Only short periods of TV, radio or reading are possible. A friend can be seen for approximately 10 – 30 minutes a week.

 

1%

May be able to complete simple cognitive tasks such as talking, listening to speech or reading (with difficulty) for several 2–10 minute periods throughout the day if requirements for quiet and resting are met. Concentration, memory and other cognitive abilities are very severely affected. Concentration may be extremely difficult. There may be an inability to maintain full consciousness throughout the day. No TV is possible but quiet music or an audio book may be listened to for short periods. A close friend or family member can be seen for a few minutes, occasionally.

PROFOUNDLY SEVERELY AFFECTED

0.5%

Concentration, memory and other cognitive abilities are extremely and severely affected. Achieving even a low level of concentration may be extremely difficult or impossible, and there may be a high degree of cognitive confusion as a result. No TV or radio is possible. There may also be a difficulty maintaining consciousness for more than a few minutes at a time. Receiving visitors (even close family members) is almost impossible or impossible. Talking, reading or writing more than the occasional few words is often impossible.


I would say I am at about 20% on both scales.

and one to show severity of symptoms

The HFME 3 Part M.E. ability & severity scale
PART 3 – SYMPTOM SEVERITY SCALE
Copyright Jodi Bassett 2005 to 2010. Taken from www.hfme.org
Note that symptom severity on a scale of one to ten means:
Mild Symptoms = 1 to 3. Symptoms present but at so low a level one can forget they are there most of the time.
Mild/moderate symptoms = 4 to 5
Moderate symptoms = 6 to 7
Very Severe Symptoms = 8
Severe Symptoms = 9
Extremely severe symptoms = 10. Totally non-functional and also possibly crying out or moaning uncontrollably and/or being near delirium. Completely overwhelmed with pain and suffering. The face muscles may be slack, the body partly or completely paralysed, and thinking or communicating may be impossible. As far as the patient is concerned, being eaten alive by a tiger could not hurt any more, or feel any worse. Absolute agony.
FULLY RECOVERED
0/10
No symptoms.
VIRTUALLY RECOVERED
1/10
No symptoms at rest. Mild symptoms on occasion following strenuous physical or mental activity but recovery is complete by the next day.
MILDLY AFFECTED
2/10
         Mild symptoms (1 to 3) for several hours or days following strenuous physical or mental activity.
3/10
Mild symptoms (1 to 3) at rest, worsened to mild/moderate (4 or 5) for several hours or days following strenuous physical or mental activity beyond the person’s limits.
MODERATELY AFFECTED
4/10
Mild – mild/moderate symptoms (1 to 5) at rest, worsened to moderate (6 or 7) for several hours or days following physical or mental activity beyond the person’s limits.
5/10
Mild/moderate symptoms (4 or 5) at rest, consisting of mild/moderate pain and/or sensations of illness/dysfunction throughout the body and brain for some parts of the day, with increasing moderate symptoms (6 or 7) for several hours, days or weeks (or longer) following physical or mental activity beyond the person’s limits.
MODERATELY TO SEVERELY AFFECTED
6/10
Moderate symptoms (6 or 7) at rest with moderate pain and/or sensations of illness/dysfunction throughout the body and brain for significant periods of the day; increasing moderate (and occasionally severe – level 8) symptoms for several hours, days or weeks or months (or longer) following physical or mental activity beyond the persons limits.
7/10
Moderate (6 or 7) and occasionally severe (8) symptoms at rest. There is moderate pain (6 or 7) and/or sensations of illness/dysfunction throughout the body and brain for significant periods of the day, increasing to moderate and sometimes severe symptoms for several hours, days, weeks or months (or longer) afterward.
SEVERELY AFFECTED
8/10
Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.
8.5/10
Severe symptoms (8) at rest and following even trivial physical or mental activity with a recovery period of hours or days, or as much as several weeks or months or longer. There is severe pain (8) and/or overwhelming sensations of illness/dysfunction throughout the body and brain for all but a few hours of the day. In some patients only small amounts of stimuli can be tolerated, and only for short periods of time. It is all the person can do to just get through the day a few hours at a time.
VERY SEVERELY AFFECTED
9/10
There is severe pain (8) and/or overwhelming sensations of illness/dysfunction throughout the body and brain for all but a few short periods in the day, increasing to severe or very severe symptoms (8 or 9) following even trivial physical or mental activity with a recovery period of hours days, weeks, months or longer. In some patients only small amounts of stimuli can be tolerated for short periods. It is all the person can do to just get through the day one hour at a time.
9.5/10
There is severe pain (8) and/or overwhelming sensations of illness/dysfunction throughout the body and brain almost continually, worsening to very severe (9) or extremely severe (10) following even trivial physical or mental activity with a recovery period of hours, days, weeks or months or longer. In some patients any type of stimulus is intolerable; even very low levels of light, noise, movement or motion are excruciating for more than very short periods. The smallest physical movements bring extreme exacerbations in symptoms. Intellectual activity is similarly affected. It is all the person can do to just get through the day one minute at a time.
PROFOUNDLY SEVERELY AFFECTED
10/10
There is very severe (9) pain and/or overwhelming sensations of illness/dysfunction throughout the body and brain continually, worsening to extremely severe (10) by even trivial physical or mental activity with a recovery period of hours, days, several weeks or months or longer. In some patients any type of stimulus is intolerable; even very short/low exposures to light, noise, movement and motion are excruciating and may require a long recovery period. The smallest physical movement brings intense exacerbations in symptoms. Mental activity is similarly affected. It is all the person can do to just get through the day one minute or one second at a time.
On this scale I would put myself at the severely affected.  I don’t normally quote scales, but they are useful to demonstrate.  I hope they display properly as I can’t manage any more.

To comment on this post, please click the header to this article. This will take you to my blog on blogger.com

Leave a Reply